
Sharing Linked Data for Health Research
Toward Better Decision Making
Cambridge University Press
Published on 9. June 2022
Book
Hardback
278 pages
978-1-108-42664-0 (ISBN)
Description
Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address "wicked problems" in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.
Reviews / Votes
'This is a much-needed contribution to the international discussion of how to responsibly use linked data in health research. By covering theory and practice, ethics and law, Adams, Allen, and Flack offer more than just a well-researched academic volume: it is a playbook for researchers and regulators to optimize health data linkage to advance the public good.' Eric M. Meslin, Ph.D., FRSC, FCAHS President and CEO, Council of Canadian Academies 'I strongly recommend this excellent, comprehensive book. It's based on sound theoretical foundations and practical solutions with international relevance. It's a highly important, unique contribution to the literature and is relevant to professionals and students alike across the globe.' Kerina Jones, Professor of Population Data Science, Swansea University, Wales, UK 'This excellent monograph explains how linked personal data can be safely used to answer important health questions. Future decisions about data sharing, requiring legal authorisation as well as independent ethical review, should be timely, transparent and based on clear and consistent criteria.' John D. Mathews, Professorial Fellow, University of Melbourne 'Sharing Linked Data for Health Research is an outstanding academic achievement and worthy of purchase and study by all involved in data-intensive research.' Edward S. Dove, School of Law, University of Edinburgh, UKMore details
Series
Language
English
Place of publication
Cambridge
United Kingdom
Illustrations
Worked examples or Exercises
Dimensions
Height: 235 mm
Width: 157 mm
Thickness: 20 mm
Weight
557 gr
ISBN-13
978-1-108-42664-0 (9781108426640)
Copyright in bibliographic data and cover images is held by Nielsen Book Services Limited or by the publishers or by their respective licensors: all rights reserved.
Schweitzer Classification
Other editions
Additional editions

Carolyn Adams | Judy Allen | Felicity Flack
Sharing Linked Data for Health Research
Toward Better Decision Making
Book
02/2025
Cambridge University Press
€36.30
Shipment within 15-20 days

E-Book
06/2022
Cambridge University Press
€89.99
Available for download
Persons
Carolyn Adams, originally from Houston, Texas, has lived in Beaverton, Oregon, since 2017. From childhood, her passion has been reading and writing poetry, and as an adult, she has cultivated a love of photography and art. While living in Houston, she was active in the art and literary communities of Houston, Austin, and other parts of Texas for many years, coordinating and performing in numerous readings, festivals, literary events, and art exhibitions. In 2013, she was a finalist for Houston Poet Laureate. She received her undergraduate degree in Humanities from the University of Houston in 2016. She has been nominated for a Pushcart prize and for Best of the Net. Since her move to Oregon, she has connected with poets in her new home and continues her involvement in the local scene, as well as taking frequent trips into the beautiful natural environment of her new home state. Her poetry, art, and photography have appeared in Caveat Lector, Steam Ticket, Bryant Literary Review, The Weight of Addition: An Anthology of Texas Poetry, Common Ground Review, Beatnik Cowboy, Kansas City Voices, San Pedro River Review, and Cimarron Review, among others. She has assisted in editing and publishing the literary journals Curbside Review, Ardent, Lily Literary Review, Mad Hatters Review, Mojave River Review and VoiceCatcher. Her poetry e-chapbook Beautiful Strangers was published in 2006 by Lily Press, and her art e-chapbook, What Do you See?, published in 2007, is available free of charge from the e-zine Right Hand Pointing. She has also published two chapbooks, An Ocean of Names in 2011, and The Things You've Left Behind in 2016.
Author
University of Western Australia, Perth
University of Western Australia, Perth
Content
Part I. Context for decision making; 1. Research using linked data; 2. Individual, collective, and public interests; 3. Social licence; Part II. Frameworks for decision making; 4. Human rights; 5. Research ethics; 6. Law; Part III. Practice and process of decision making; 7. Existing practice and processes; 8. Better practice and processes.